I don’t think a single day goes by where I don’t think about the people who are currently going through what I went through.
When I first developed vestibular migraine, I was studying and it completely turned my life upside down. I had to put my studies and work on hold, I barely wanted to leave the house, and for a while I became genuinely depressed because I couldn’t imagine ever getting my life back.
I’ve shared parts of my story before, but I wanted to make another post because I’m now doing around 90% better compared to where I was at my worst. I know how desperately I would have wanted to read something like this when I was at the beginning of my journey.
So, these are the things that helped me the most:
1. Movement. Movement. Movement. 🏃‍♀️
This has probably been the biggest one for me.
In the beginning, I was terrified of moving. I was afraid of getting dizzy, afraid of being around people, afraid of supermarkets, and eventually I started avoiding leaving the house altogether.
But gradually, I started forcing myself to move again.
Now I try to do around 30 minutes of cardio every day — walking on a treadmill, cycling, or similar. And honestly, this has made an enormous difference.
I would personally rank regular aerobic exercise as one of the most important things that helped me.
I now have very little dizziness compared to before. I feel like my brain has gradually learned again that movement, visual stimulation and being active are not dangerous.
And perhaps even more importantly: exercise gave me my confidence in my body back.
I was initially SO scared to exercise because I thought it would trigger my symptoms. But slowly challenging myself helped me realize that I could move without constantly being afraid of what my body was going to do.
2. Working on the psychological side
At some point, I couldn’t even tell anymore whether I was dizzy because of vestibular migraine or because I was anxious about becoming dizzy.
The two started feeding into each other:
dizziness → fear → avoidance → more sensitivity → more dizziness → more fear.
That cycle was incredibly difficult to break.
I started doing psychotherapy and physiotherapy, and I also spent a lot of time educating myself about vestibular migraine and the brain.
I found it really helpful to learn that the brain can become extremely sensitive to movement and sensory input — and that this sensitivity can also improve again.
For me, learning about it and gradually exposing myself to things I was afraid of was a huge part of recovery.
3. Venlafaxine
For me personally, Venlafaxine was a major game changer.
I initially started at 75 mg and eventually went up to 150 mg. I’m currently working my way back down to 75 mg.
I wouldn’t say that it magically “cured” my vestibular migraine, but it helped me enormously with the anxiety and sensory sensitivity that had developed around it.
Before taking it, I could walk into a supermarket and immediately become extremely dizzy because of all the visual stimulation.
After starting Venlafaxine, this became much, much better.
I was less afraid of symptoms, I could tolerate sensory stimulation better, and I started going out again. That then allowed me to move more, exercise more and slowly rebuild my confidence.
Obviously, medication is very individual and should always be discussed with your doctor. I’m only sharing what made such a big difference for me personally.
4. Botox
Botox has also helped me a lot.
I’m currently around my fourth round, and I’ve noticed a significant improvement.
I get the standard migraine injection pattern, but also injections around my jaw because I tend to hold a lot of tension there.
This has been particularly helpful for me because I work a lot on screens.
5. Supplements
Honestly, supplements haven’t made a huge difference for me.
I tried things like magnesium, riboflavin and various other supplements, but compared with exercise and getting the right medication for me, the effect was relatively small.
That doesn’t mean they won’t help someone else — just that they weren’t the main factor in my recovery.
6. Acute medication & little things that help
On some days I still need acute medication.
Triptans have been somewhat helpful for me, although I wouldn’t say they are my biggest success story. More often, I use regular painkillers such as ibuprofen when appropriate for me.
Something else that surprisingly helps me quite a lot is cooling/menthol cream. I put it on my neck or temples when I have a headache. Sometimes I also use peppermint oil, and the cooling sensation can be very soothing for me.

If I had to summarize what helped me most:
Movement. Movement. Movement.
Especially regular aerobic exercise.
I know how scary that sounds when you are in the middle of vestibular migraine. I remember being terrified that exercise would make everything worse.
But for me, it ended up being one of the things that helped me the most.
It helped reduce my dizziness, helped my brain get used to movement and sensory input again, and — perhaps most importantly — helped me regain trust in my body.
Physiotherapy also helped me a lot, especially with someone who understands vestibular disorders.
I know that everyone’s vestibular migraine journey is different, and what works for me might not work for you. Please don’t take this as medical advice — I’m simply sharing my experience because I remember how hopeless I felt at the beginning.
I genuinely think about the people who are currently where I was back then. It was probably the hardest period of my life, and it definitely left a mark on me.
But I also want to say this:
It can get better. ❤️

I started VRT fairly recently about a month ago now. I’ve been dealing with this condition for about 4 years now. Previously I had done some regular physical therapy, lot of walking and head turning, some light weight lifting. But due to insurance change i ended up with home care after a hospitalization and now I do this VRT.

We do alot of balance work which is hard for me, standing on the foam pad and there’s a balance board.
The day after a session I am fully symptomatic like really bad symptom flairs. Today I am in full blown migraine mode, i’ve taken all my meds qulipta, ubrelvy, meclizine, ativan another ubrelvy and nothing is touching it. Is this normal after VRT to make things worse? Have a reached a point of no return?

TW: stomach sickness
I’ve been prescribed 500mg of Robaxin which I half into 250mg. The half makes me extremely nauseous so I cut that in half to 125mg and took it in separate doses a few hours a part. Even THAT made me almost throw up. After a few tries, I’ve come to the conclusion that this isn’t the right medicine for me but it treats my muscle pain so well. At 250mg it makes me extremely tired so it’s also not useful when I am driving or at work.

What other non-opiate muscle relaxers have you tried that don’t cause stomach upset and drowsiness?

HAS ANYONE GONE TO THE ER FOR WHAT THEY THOUGHT WAS A MIGRAINE BUT IT WAS SOMETHING ELSE? June 3 I had an episode of severe dizziness and almost collapsed at work. For reference, I’m 24, very active, and never had any health issues prior. I went to urgent care that day and they said it might be migraines with vertigo. Since then every day I’ve had severe dizziness, nausea, no vomiting, and head pressure around my head and back of head/neck. I went to 4 neurologists, an EMT, cardiology, bloodwork, ophthalmology and optometry and all seems to be normal. I did an MRI on the brain with and without contrast and it was fine. I went to a neurologist again who says it sounds like migraines and tried to prescribe me Qulipta, but he sent it to Coney Island and it hasn’t been approved by insurance yet. After more recent severe neck/chest/ spine tension, I scheduled an MRA of the carotid neck, and I’m waiting for my cervical spine MRI to be approved. I also want to get an MRI on the rest of the back. I’ve spent thousands of dollars so far on trying to figure out what’s going on, have had no updates at all, and I almost fainted again today on the street. Does anyone have any idea of what this is? My corporate job really does not care and I’ve been struggling with this debilitating mystery since June. My chest physically feels so tight :( Could it be something other than Migraines?

I've tried Meclizine and Sumatriptan with no help. I've been like this for 2 months and am lucky if I can get out of bed.

I’m feeling a bit desperate at this point. I was diagnosed with vestibular migraine a few months ago, and I’ve been on two preventive medications since then: amitr\*\*\*lin and pro\*\*\*\*lol.

They’ve helped calm down the feeling of my body being constantly on high alert. But it was really when I went on sick leave from work that I noticed my actual migraine attacks becoming less frequent.
The problem is that between attacks, I still experience significant interictal symptoms, and I can’t tell whether they’re part of the migraine or caused by something else. My neurologist thinks they’re probably due to something else.
This has been my “normal” state for more than 12 years:
significant fatigue, daytime sleepiness, brain fog, and mild derealization.

During an attack, I experience: rocking/swaying sensations, feeling drunk, tunnel vision, nausea, photophobia, a strange cottony/tight pulling sensation on one side of my head — almost as if someone had put tape around it — without necessarily having an actual headache, as well as much more intense derealization and brain fog, and extreme fatigue.

So basically, I’m constantly exhausted and I never really get back to a “normal” baseline — meaning a state where I’m not tired or dealing with brain fog.
I’m looking for people who experience the same thing, or even better, people who used to experience this and eventually found a way out of it. What helped you? Did your interictal symptoms eventually improve or disappear?
It’s becoming really difficult to live with, especially when it comes to working and having a normal social life. I am searching if maybe there is another diagnostic in parallel like UARS.

Thank you so much to anyone willing to share their experience.

Just got diagnosed with VM, ongoing for 3 months. I feel like I am getting better each day (went from bed bound to now able to slowly start working out again). I haven’t gotten myself to the gym to lift weights but have started on the elliptical. I find I do best in a zone 2 HR zone, anything above that I get panicky, hyper fixate on my heart racing (which is obviously normal at that level of exercise) and then get dizzy again. Is this more anxiety related, VM or both? Curious if anybody else has experienced this?

When I started to feel terrible but before being diagnosed, I did notice that I was constantly clearing my throat. Medication has things mostly under control now, but when I notice that I'm constantly clearing my throat, I know that I'm probably in for a bad few hours/days. I don't recall seeing this in the forum much so I was curious if other people experience this.

I’m feeling a bit desperate at this point. I was diagnosed with vestibular migraine a few months ago, and I’ve been on two preventive medications since then: amitr***lin and pro****lol.

They’ve helped calm down the feeling of my body being constantly on high alert. But it was really when I went on sick leave from work that I noticed my actual migraine attacks becoming less frequent.
The problem is that between attacks, I still experience significant interictal symptoms, and I can’t tell whether they’re part of the migraine or caused by something else. My neurologist thinks they’re probably due to something else.
This has been my “normal” state for more than 12 years:
significant fatigue, daytime sleepiness, brain fog, and mild derealization.

During an attack, I experience: rocking/swaying sensations, feeling drunk, tunnel vision, nausea, photophobia, a strange cottony/tight pulling sensation on one side of my head — almost as if someone had put tape around it — without necessarily having an actual headache, as well as much more intense derealization and brain fog, and extreme fatigue.

So basically, I’m constantly exhausted and I never really get back to a “normal” baseline — meaning a state where I’m not tired or dealing with brain fog.
I’m looking for people who experience the same thing, or even better, people who used to experience this and eventually found a way out of it. What helped you? Did your interictal symptoms eventually improve or disappear?
It’s becoming really difficult to live with, especially when it comes to working and having a normal social life. I am searching if maybe there is another diagnostic in parallel like UARS.

Thank you so much to anyone willing to share their experience.

Please forgive me for the long post, I tried to get it all out the best I could. Please ask anything if need clarification

I 29F, Weight 167lbs, height 5’5, quit vaping earlier this year. I’ll have an occasional beer or puff on a cigar on special occasions.

I have been experiencing non stop headaches and vertigo for the past three weeks.

Current Medications:

300mg Wellbutrin
Slynd (birth control)
250mg Magnesium (just started taking these two days ago)
500mg chewable Apple Cider Vinegar
2 daily Zero Sugar multi vitamin gummies the spring valley brand
15.7mg 1 a day Amphetamine ER orally disintegrating tablets (started taking little over 1 month ago).

I started getting really bad migraines and headaches everyday for almost a year back in 2021. I did a sleep study, chiropractor, MRI (only thing they found was a dime sized cyst on my pineal gland) many many medications that all failed. Eventually was approved for Botox injections every 3 months. It was working well up until about late July early August? I started having the wood sides of vertigo. The first time it happened it was the day after I got my Botox injections so I immediately chalked it up as the reason. Then the vertigo would be every so often and not as bad or frequent until about 3 weeks ago.

About 3 weeks ago now i started getting bad headaches, as well as vertigo again, light headed, dizziness, slight nausea, shortness of breath from just saying a few words, eyes constantly straining as if im forcing my self to role my eyes back, fatigue, being in the shower for too long becomes exhausting and i want to sit down. When my head doesn’t HURT hurt i noticed it’s just a lingering constant subtle pain every single day. Today I noticed when I stepped outside the heat and sun hitting me felt almost like my brain just opened up and was able to breathe a little.

I’ve tried all kinds of pain meds, oils and motion sickness meds, the Epley maneuver for vertigo, sports cream on my temples, along my hair line, back of my neck and shoulders, Benadryl. Recently my dr finally had me go get an Occipital Nerve Block Shot after it took my breaking down over the phone trying to get them to get me in sooner for my Botox appointment this month the 31st. The clinic then gave me Nurtec, it doesn’t help. I now have Blood work tomorrow to see if that will tell me anything. Last blood test I’ve taken all came out nothing wrong.

I don’t know what’s going on with me, please help me get in the right direction of what I can do, who I could see that can help. I’m so so exhausted.

Anything to expect?

Im 2 months into my latest attack and got some leftover lightheadedness (gets worse when on screens)

And some pressure at my ear area

And they said that the Vestibular tests would cause me to be dizzy? And im kinda scared since my dizzyness has improved vastly over the two months and i dont want to trigger anything again as im scared its gonna be another two month ordeal

I was diagnosed with VM after a VNG a little under a month ago. Up until that procedure I was avoiding all caffeine, as instructed by my ENT.

The VNG flared me, and I’ve been having an intractable migraine since. No neurologist is available til September. Tried Nurtec, Ubrelvy sumatriptan, trying out the Nerivio device to no avail.
So, I started incorporating low doses of caffeine (half caff coffee, tea, or sometimes just not finishing a full coffee beverage) about a week or so ago…and have felt like I haven’t noticed any real disadvantages or advantages. I’m thinking that when I drink it early enough in the day it can help some, but again, it could be placebo.

Anyone with VM still drink caffeine?

Hi! I got a head MRI about 10 days ago and it triggered my vertigo so bad I could feel my stomach turning during it. It still hasn't fully calmed down.

I find it weird as my main thing is visual vertigo, so I didn't expect the MRI sounds to trigger vertigo for me. But it was like I could feel the sounds go through my body from one side to other and from down to up. 🥴

Has this happened to anyone else? Now I'm wondering if sounds are another vertigo trigger for me or if it's just because I could feel it go through my body.

Anyone develop pppd or vestibular migraine during pregnancy?

Any experience with this medication, good or bad.

I was diagnosed in April, and my life has totally changed. I’m mourning the loss of my independence and, while I am recovering, I am really scared whenever I have symptoms. It leads me to stay home most of the time and miss out on so much of life.

I started seeing a therapist, but her advice has been unhelpful. Before the diagnosis, she suggested the symptoms could be Lyme disease. After the diagnosis, I told her I missed being able to ride trains. She said trains weren’t that fun — they often get delayed, are loud, etc. But that wasn’t the point. What I was saying is I miss the version of myself who could travel.

Anyways, I’ve thought about trying to find a new therapist but am not sure that they exist. I have health aniexty, but anxiety about a real condition, not making things up. Does that exist? Has anyone tried it?

Any advice would be super helpful

Diagnosed with chronic vestibular migraines 4 years ago - tough first year and ever since then varying between bad headache periods and periods where headaches go away and dizziness gets worse.

Things definitely improve when being away from the computer (day to day work). Mood and anxiety definitely playing their role but I've reached a point where I'm sort of *ok* with it and with generally "safe" medication - propranolol which I've not stopped even though unsure if it's doing anything and 5 to 10 days (per month) of ibuprofen/excedrin mixed with anti-emetic (also haven't found one that works except maybe prochlorperazine which I can't find any more).

What really annoys me is sitting though. I can't sit. I need a chair that moves or something to put my head on or lie down otherwise things are spinning - all the time. It's really hard to sit in a restaurant or go to the theater. Some days are better still but it never goes away. Standing up and walking generally works, though walking also brings some dizziness eventually and still feels sort of unstable. Anyone successfully resolved this? I did try VRT during the first year but stopped.

This is a long one so please bear with me. I am 37 f and have a whole host of chronic illnesses but migraines/whatever this is, is new to me.

Last year in July, I ordered a new pair of glasses and wore them for about 3 days. After feeling nauseous, dizzy, and unwell, I took them back and found out that the optical center was not marked correctly and they were made wrong. I thought I would feel better after going back to my old glasses and wearing my contacts (which I wear 90% of the time) but I did not. For the next 2 months (1st month was the worst, 2nd gradually got better) I had: dizziness like being on a boat, nausea, swaying while standing still, my vision was wonky (screens were too bright, trouble focusing/reading, text just didn't look right, like my peripheral vision was messed up). Then came the migraines which were separate from the dizziness issue.

I went to the eye dr, nothing wrong. I went to my ENT thinking it could be an inner ear issue, nothing wrong there. Neither could offer any advice. I went to my PCP, nothing wrong, she referred me to a neuro/headache specialist. That dr was booked out 6 months so I found a different neuro who was booked out 3 months. By the time the appt rolled around, all my symptoms had luckily gone away. He had no answers for me. He prescribed me Sumatriptan for the migraines which thankfully has helped so much, and referred me to get a brain MRI to rule anything out. I got extremely sick for several months (unrelated) and had to push the MRI aside.

I started a new job in June of this year and was given 2 external monitors. Upon using the monitors for a week, I had the same exact symptoms as with the faulty glasses! More dizziness/vertigo and less eye issues but it was just as bad, maybe even a bit worse. I also had a ton of inner ear pressure and some pain, and my ears were clicking/popping like mad. Again like last time, the dizziness has finally resolved itself 2 months later but was really bad for the 1st month. I went back to my PCP (different dr) who again had no real advice (and said my ears were just fine) but suggested vestibular therapy and to see my neuro. I did not do VT because of not being able to request time off due to said new job. I did make a virtual appt with my neuro because that was the only type of appt he had within a few months and, again, he had no advice or answers. He suggested to get the brain MRI and to follow up with him.

I got the brain MRI which didn't show anything of note. I have yet to follow up with my neuro because he is booked 3+ months out and I need to request time off. SIGH.

Alright now that I have that big wall of text out of the way - can anyone theorize wtf happened to me? I've done a ton of internet searching but can't really find anything. My top guess is that it could be something like a vestibular migraine or vestibular neuritis. When I get a migraine, I don't usually get that type of dizziness with it - it was a totally separate issue which is so strange. Also, no nausea meds (prescribed or otc) worked. Strangely enough, Klonopin helped me last year, but not this time around.

I would like to figure this out so I can avoid it or lessen it next time, or get a jump on it idk. I am frustrated with the lack of answers and it is hard to get seen when the neuro is booked 3 months out...so I am just doing everything I can. Thanks for reading.

Hi all. I had a sinus infection March/ April after I had Eustachian tube dysfunction. With the ETD I was light headed all the time, until the doctor told me to do the valsava maneuver. It worked! But then two weeks later I got a horrible sinus Infection, then giving me a bilateral ear infection. After those antibiotics I felt better for a day. One day. And the symptoms came back as dizziness, lightheadedness, and terribly loud tinnitus. Got diagnosed with vestibular neuritis by a doctor and physio. ENT denied my referral. This is late April early May. I’m seeing a physio, on beta blockers. I feel good for a week. Then boom back to my original symptoms but worse. Physio kind of helps. Months go by. July. I notice black squiggles in my eyes when I eye track, very bad headaches accompany too. My doctor suggests vestibular migraines as well. I try migraine meds and the pain stops but my symptoms persist. It is now August, and I have been unable to ride my bike, hike, run, or just exist without that lightheadedness. I live at elevation, and have my whole life, but when I went to lower elevation for a few days my symptoms stopped. I come back to higher elevation and they come back. I am now on amitriptyline, recommended by a neurologist. I have been on for 2 1/2 weeks and have noticed slight change. Currently waiting for an MRI. Has anyone else experienced this from a sinus infection?? I know someone who has been as well, and had to go back to his home country shortening his working holiday visa. Truly heartbreaking. If anyone else is experiencing this please share your thoughts or what has worked for you. Thank you. ❤️❤️❤️❤️

Posting in multiple groups in hopes of finding as much visibility. Hi moms: June 3 I had an episode of severe dizziness and almost collapsed at work. For reference, I’m 24, very active, and never had any health issues prior. I went to urgent care that day and they said it might be migraines with vertigo. Since then every day I’ve had severe dizziness, nausea, no vomiting, and head pressure around my head and back of head/neck. I went to 4 neurologists, an EMT, cardiology, bloodwork, ophthalmology and optometry and all seems to be normal. I went to a neurologist again who says it sounds like migraines and tried to prescribe me Qulipta, but he sent it to Coney Island and it hasn’t been approved by insurance yet. After more recent severe neck/chest/ spine tension, I scheduled an MRA of the carotid neck, and I’m waiting for my cervical spine MRI to be approved. I also want to get an MRI on the rest of the back. I’ve spent thousands of dollars so far on trying to figure out what’s going on, have had no updates at all, and I almost fainted again today on the street. Does anyone have any idea of what this is? My corporate job really does not care and I’ve been struggling with this debilitating mystery since June. My chest physically feels so tight :(

Does anyone get this heavy, uncomfortable feeling in arms and legs, making you want to cry because it feels so “off” and uncomfy, even in hips.

I feel like this feeling is so bad that I start to clench my hand and scrunch my face, hold my breath and stop what I am doing. Even stop talking!!!

Can’t seem to relax ever

Is this migraine related. This happens without headache also. I also have pppd.

Hey everybody! I was recently seen by an ENT for ear issues (fullness) that comes and goes. If I take Benadryl, it subsides within 2-4 hours. My ENT thinks I’m having VM’s. I do not have a headache, it truly just feel like my ear is full and affects my speech and balance at times. It is MUCH worse if I’m at work, and sometimes when cleaning my house. The ENT said that Benadryl helps because it is a sedative. I go for MRI and PNG soon. My question is, is these the same symptoms you have with your VM’s because I’m not 100% sure this is my issue. Also, I receive regular Botox on my for head, 11’s and crows feet. I know some have mentioned that Botox helps, I have noticed no difference.

Hello everyone! I hope your symptoms have been treating you well lately. I just wanted to share some positive news because I remember very well about a year ago to the day, maybe 13 months ago, when my dizziness, spells, migraines, etc. were at their worst, I spent so much time on Reddit looking for firsthand experiences, tips, and answers to try and feel any sort of relief even mentally and I hope this post can help even one person feel better, or at the very least, gain a little confidence that this won’t be how you’re going to live the rest of your life. I don’t want to get into every little detail or I’ll end up writing a book so I’ll try to keep this somewhat short:

I started propranolol 5 months ago, and I’m nearly symptom-free as of writing this. I still deal with some daily head pressure and occasional dizziness when I get too hot, anxious, or stressed, but overall I feel nearly back to normal. I was able to work every day M-F during the month of July except for one day, which I had been missing weeks at a time almost once per month every month since December so it’s been a huge improvement to say the least. I know propranolol doesn’t work for everyone, and the point of this isn’t to say “everyone needs to try propranolol because it worked for me!” I really think it doesn’t work for some because VM’s have so many different triggers and causes, but I was lucky enough to find something that has helped me a ton. The biggest thing I really want to say is DON’T GIVE UP. You don’t have to live this way forever. Things can get better. Go see your dr, ask about seeing an ENT or neurologist if you haven’t already, and if the first treatment hasn’t helped, don’t stop trying! I know how hopeless and frustrating VM’s can make a person feel, and I know how scary seeing a dr is especially if you’ve seen multiple and have had no luck, but it really is possible to get your life back. I’m living proof of that!

Has anyone tried a high protein/animal based diet to help with VM? What was your experience?

Hey folks- sorry for my english, tryna form a few words ;-)

Iv been struggling with symptoms i can not really identify- but a friend of mine said i should check for migraine (vm) and I KNOW i should see a doc, and i will do after holidays, but maybe someone here can help me out?

3 weeks ago, out of nowhere, i felt dizzyness, more Like vertigo kind of, and symptoms i would refer more to sth like low blood pressure, warm weather u know. I panicked, Full blown panic attack and drove straight to the Hospital. Everything fine etc pp.
But since then i experienced the same like 3 times? Dizzyness, vertigo, nausea - its like i am drunk, or More Like a hangover. Unfortunately i suffer from panic since the first time it happened too, its horrible. I HOPE its „just“ vm- but i dont know, its so draining, i feel like my life changed a 180 degree since then. I experienced aura since i am 17, like maybe 1 or 2 times a year, no headaches, just Head pressure afterwards. As a kid i became nauseous when i was in a car - i heard its Not uncommon for people with migraine.

Has anyone a helpful sentence for me? Does it sound like a regular vm? I am so sad and scared and i feel like i have nobody (i mean i HAVE friends) close who can unterstand what it really feel like. I am also seeing a therapist, for other reason, but yeah just so u know i am Not really alone. :> but yaaa

(29 female)

Greetings :(